Wednesday, September 11, 2013

MS or not - part 2 - NOT a new hope

It's now been 4 months since one of the Rush Hospital's MS specialists declared "You may not have MS". And I still find it hard to understand why not.

Like after my visit to the regular neurology department at Rush yesterday

Dr - The damages in your brain could be from other causes than MS. Possibly even your diabetes.

ME - I can understand the diabetes causing my neuropathy. But what about the vestibular (hearing and balance) loss? Or the muscle spasms?

Dr - Those wouldn't be caused by diabetes. Those are still puzzling.

ME - But MS would explain them.

Dr - Yes, but it may not be MS. So we're just going to treat the symptoms.

I left with an order for Vestibular Physical Therapy, a plan to see if I can sleep for more than 2 hours at a time and wondering why I want a label for my disease.

Today I know why.

At least with MS, while there was no cure but there is at least plenty of research going on. There are new drugs and new clinical trials. Without a diagnosis of MS I wouldn't be eligible.

Even when discussing why I was taken off of the MS drug I had been on, Rebif, I was told that the side effects outweighed the suspected benefit. I didn't ask at the time, but would the same be said for trying other, newer drugs that work differently? Would my insurance even pay for it since I was no longer confirmed to have MS?

Another reason I want that MS label - I now feel like an MS imposter. Should I stop going to my MS Aquatics and Yoga classes? I won't stop because I know they are helping me so much. But still I have thought about it.

Should I stop reading and responding to MS forums and pages? I get so much new information and I identify so well with everyone in them. I understand what they are going through. I'm going through it too.

Only now, apparently what I'm going through is not MS. Just an unknown condition that is affecting parts of my body without displaying signs in the appropriate parts of my brain.

When I left the doctor yesterday, it felt like I had left all avenues of hope back in his office.

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About Me

I've always been a story teller. But it took what was originally diagnosed as MS to give me time to write them down. Since I was told that my condition is not MS but is something unknown that seems to baffle every doctor I've seen had added even more to write about.
I started this blog to record my stories. Some are about my Family. Some share my thoughts about my condition and the many ways it's changed my life. Still others are thoughts and opinions that I feel I need to express.
Mostly I'm an optimist. I really want to see the goodness and humor in people and situations. I find that especially with my health problems I need to do that.
Even before my medical problems started I would tell some people that I wanted to be a philosopher. This has given me a soap box for those philosophies.
If you enjoy reading what I've written, great!
Otherwise, it's really not a problem for me.